Haemochromatosis Society UK

New and searching

I'm Janey. A former physical therapist, I'm increasingly frustrated with the medical world I once embraced.

The more I research with groups full of generous, knowledgeable sufferers, the more I don't understand medical practitioners refusal to receive new research and apply common sense!

I'm looking to nutrition as a major player in healing and feeling mighty overwhelmed!

I'm looking forward to learning from you.

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Welcome Janey. I agree with your sentiments.

I'm here because of iron overload but not HH.

This site is not very active if you are looking for advice but people will come on eventually if you have a query.

Good luck.

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Thanks, Madlegs.

I've found a supportive email group through Iron Disorders Institute. I happened upon them doing research after my diagnosis. Very knowledgeable group of folks. Someone in there mentioned this website as a more efficient platform than email. They did mention there wasn't much traffic. Still, I thought I'd give it a try.

My other two big issues are hypothyroidism and arthritis, but I didn't see groups for those that didn't specify UK. So I wasn't sure if it was okay to join if you were from a different region.

Thanks again for your welcome!


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Welcome to our forum.

There is also a group called ThyroidUK for anyone with thyroid issues and has members worldwide.

I have both Haemochromotosis and hypothyroidism caused by Hashimotos Auto Immune Disease.

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Sorry for your health issues.

Thanks for your helpful reply.


Good one! That was me!

I was making the point that HU was a better form or structure for a web support group.

Many on the Iron Disorders have complained about the difficulties of the email format.


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Is this the only group you are in here?

Is this the only other format you are on? Have you found other helpful formats?


I'm in this group because I have ferritin level of 1300 + but not hemochromatic as far as any tests show. Everything else healthy.

I have started phlebotomy last week and will see how things progress.

I'm also on Restless Legs site because I've had that pleasure for ages- that is an excellent, well attended site , full of help, support and information.

I look in on the Pain Concern site because I'm osteoarthritic in hips and recovering from major spinal surgery. But I don't find it a particularly engaging site - too diverse.

I also look in on the Thyroid site because they know their vitamins etc very well.

That's it for me!

Basically , I find the HU format very good and easy to use.

Facebook has a lot of help pages- but I don't do FB.

What are your concerns , healthwise?

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Thank you for the information.

I'm sorry to hear about your spinal surgery and restless leg syndrome.

I have HH (homogeneous C282Y) and hypothyroidism. My labs are all over the place. After 2 years, they still can't get a stable medication dosage. The last time I donated blood, my ferritin was right at 100. 6 weeks later, my ferritin was at 20!

I also have osteoarthritis. I had to have a joint reconstructionof my left CMC joint in my 40s. (I'm right handed.) I have osteophytes from head to toe. Not helped at all, I'm sure, by the blown disc in my late 20s.

Best with your phlebotomies!

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Sorry for all your troubles!

100 ferritin is not high - but the gene marker is enough to watch out.

Thyroid group would be well worth talking with if you haven't already done so.

I do hope you get some relief soon. It can be so frustrating to get through all the medical jungle and get sense of it all.

All the best.


Just on the ferritin variations- apparently that can happen, depending on when the test is done- after fasting, vit C or calcium intake , high or low fat meals and so on.

It was discussed on the Iron Disorders site - but I don't know how to access the particular discussion. 😢



I make it a habit to always take an early morning appointment and go in fasting and hydrated, for the reasons you mention.

I hadn't thought about high fat/low fat meals impacting ferritin.

Another factor that impacts ferritin levels is inflammation. That's something I can't control on a daily basis. But I need to make a notation regarding what my body is doing at any given lab appointment.

A related tangent:

I just learned this year that vitamin C supplements, like EmergenC, can give falsely high blood sugar readings.My first high fasting sugar reading ever!

I greatly appreciate the information. Thank you so much.


I'm fortunate that my ferritin hasn't gone high like yours. My sister's was in the thousands when she got diagnosed. She talked about how much better she felt after her phlebotomies. Our dad's donated blood or plasma every 6 weeks for as long as I can remember. I used to, then kids😊

My saturation was staying high. My joints were aching. My iron and hemoglobin were good, so I figured I'd give it a try.

It was just a regular donationWith the iron levels I went in with, I wasn't expecting one donationwould tank my levels.


I put up your situation (anonymously) on the IDI email chat and they came back that inflammation was the main fact - as you have said.

All the best.


Thanks for doing that. I appreciate the feedback and well wishes.

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